The Snow Just Keeps Falling

Charlie's, and my and (I think) Jim's, schools had a snow day yesterday. I know, big surprise, it's not like there haven't been any snow, or snow days, around here recently. (I'm looking at this post from the 9th of February in a bit of awe at being able to see the pavement of a parking lot.) Yesterday brought "wintry mix" in the form of snow and a lot of slush, which sometimes fell from the sky in chunks and blobs. Consequently, the field that constitutes the final segment of our neighborhood walks was a veritable pond (wet snow + puddles + dead grass + mud + prickly pine cone-ish "carbuncles," as Jim likes to call them). Which after walking through four times, Charlie's shoes were completely soaked through.

Nonetheless, he only went through two pairs of shoes. Stuffing his wet shoes with newspapers and putting them atop the heater vent seems to do the trick.

The day passed pleasantly.

Let me repeat that.

The day, a snow day when Charlie's routine of ride-school-ride-walk-home etc. was thoroughly disrupted, passed pleasantly.

Charlie slept in (after falling asleep around 11pm). We went straight to a local branch of LabCorp: It was some months ago that his neurologist (with whom Charlie has an appointment today) wanted him to get a number of tests (some genetic). Charlie had a very successful experience getting his blood drawn at that very LabCorp several months ago but, alas, the lab wasn't able to do some of the tests or some such and the 15 vials they took went for nought. We've tried a number of times to get the testing done again but haven't been able to: The staff just didn't seem like they could handle it, the waiting room has had 25 people waiting (even at 8am).

Thursday morning there were only about a dozen people waiting. Charlie stayed with Jim in the white car and, standing by the door (no seats left), it finally occurred to me that, while it was great Charlie managed to get a blood draw done at LabCorp once, we needed to try something else. A quick call to his pediatrician and we'll be scheduling the testing at an outpatient clinic at the hospital (yes, the one where we went to the ER in December), where they'll hopefully have more people to help with the testing. And Charlie's certainly familiar with the hospital.

Solution found, we spent the day driving (Jim mostly—the streets were a sloppy mess), making visits to Charlie's usual spots (a convenience store that stocks the particular Entenmann's crumb cake that he likes), using the computer way too much, and those walks. We usually see a few dogs and dog-walking owners on these but most people seemed to be staying indoors, except for one runner (in shorts, no less) and , on the slushy pond-like field, a flock of Canadian geese (they all turned and walked the other way when we came by). Even though he had cold, wet feet and was being pelted by slush droplets, Charlie trudged on without a complaint, sometimes stopping to stomp and poke at the snow. He was again up till almost 11pm. He wasn't agitated or anything and seemed to just want to hang out in his room and then on the old blue couch until I started carrying up his blankets, a not very subtle non-verbal way of saying "past your bedtime."

Days like Thursday remind me of why I feel so troubled to read about autism as caused by toxins, and that our main focus should be to find autism's cause. I wrote more in response to a New York Times op-ed by Nicholas Kristof at Care2.com; really, mustn't our focus be about how to help our kids learn as much as they can, be the best they can be, have good lives? and for us to have good lives with them? Reading about what happened to this mother and son—a son who, like my boy, struggled with head-banging—makes me wish all the more that energies could be focused on providing supports and care for individuals with disabilities and those who take care of them.

It's a privilege to take care of Charlie, but one that can often, it's true, not be so easy.

Today, Friday, is yet another snow day. (Crazy, yes—Charlie's never had so many and neither have I at my school.) Charlie's neurologist visit isn't till 4pm and while it's an hour and a half plus away, we can certainly take our time getting there.

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Comments

I’m still digesting the mother and son, and the toxins and autism articles (“tortured life” “years of struggling” “driven to the loneliest place on earth”)
Both articles worry me.
Another snow day! Hope you get in a good couple of walks – and that your classroom is leak free soon.

Looks like a snow day today here as well- we’ve been lucky in that we’ve only had a few this year, but one of the girls has been up and down stressing over it all night. She’ll be fine after a while if it is a snow day- we’ve got lots of things that we can do here to help her have fun, but the sobbing about it on and off throughout the day always gets to me. She certainly could have worse reactions (she doesn’t lash out or injure herself), but it’s always difficult to hear.
What an incredibly sad story about the mother and son- stories like that are so difficult to read from any point of view. And although I’ve always found the toxins theory interesting as it very much seems to apply to our particular family, it’s an academic issue- my kids need supports and acceptance, not more hysteria and time spent on research.
(And much as I am somewhat of a fan of Kristof’s, my first reaction on seeing the article title was “Noooooo!” We’re just making it through the anti-vaccine nonsense, so let’s not start another emotionally charged, unproven, unresearched issue while there are more important things to be done.)

well, i hope you have another day…yet again outside of the beloved routines…that goes well.
emergency crumb cake may be called for.
charlie has had a big, brave heart this winter making it through all of these snow days and plan-changes.

I’m glad Charlie had another good day. We’re finding our snow bots aren’t tall enough to keep us dry. Our sons, who go to school in Vermont and New York state, undoubtedly walk around campus in sodden sneakers. We sent the off to college with good snow boots from L.L. Bean but they (the boots) return home looking suspiciously unworn.
Our daughter, on the other hand, loves wearing snow boots and has about five pair, including some cute, shearling ones with pom-poms on the laces that I covet. Her school has been closed a lot for snow this year and she complains that she’s bored because the snow is too deep for us to drive her to see her friends.
I know you, like other parents of children with autism, love your child beyond words, but wouldn’t it be a good idea to find out what causes autism? Just in case it can be eradicated or if that’s impossible, at least ameliorated?

I’m glad Charlie had another good day. We’re finding our snow bots aren’t tall enough to keep us dry. Our sons, who go to school in Vermont and New York state, undoubtedly walk around campus in sodden sneakers. We sent the off to college with good snow boots from L.L. Bean but they (the boots) return home looking suspiciously unworn.
Our daughter, on the other hand, loves wearing snow boots and has about five pair, including some cute, shearling ones with pom-poms on the laces that I covet. Her school has been closed a lot for snow this year and she complains that she’s bored because the snow is too deep for us to drive her to see her friends.
I know you, like other parents of children with autism, love your child beyond words, but wouldn’t it be a good idea to find out what causes autism? Just in case it can be eradicated or if that’s impossible, at least ameliorated?

“mustn’t our focus be about how to help our kids learn as much as they can, be the best they can be, have good lives?” I too wish that this message got as much attention in the press and as many research dollars as cause/cure.

“mustn’t our focus be about how to help our kids learn as much as they can, be the best they can be, have good lives?” I too wish that this message got as much attention in the press and as many research dollars as cause/cure.

It’s not an either-or. Do both.
I think the issue is that the focus is so heavily on cause and related pathologies and not so much on what happens afterwards in the less heady day-to-day- referring to methods of instruction, supports and structure. I don’t necessarily restrict the observation on the latter to autism. The former can sometimes be arm-chair quarterbacked just by speculation (as the media often demonstrates), the latter needs something more concrete.
When I scan grant announcements, that focus seems to be reflected there.
Lest I be understood, I am interested in the etiology(ies) and suspect that at in least some cases the research trajectory will get us there. However, if it takes 20 years (or more) to get through basic research to translational research, to the applied, that’s a lot of people walking around looking at watches waiting for those coordinated quality systems of school, community, and employment support to be established.
I hope that I am only being pessimistic and that the reality will prove me wrong, but I spend a lot of time reading old articles from research and pilot studies of the late 60’s and early ’70’s, and it might be surprising that quite a bit was already known about what was systematically needed and how to do it – and it’s not all that different than what is still discussed now. 40 years and we are still talking about it.

Ruminating on your last paragraph, Regina—
“I spend a lot of time reading old articles from research and pilot studies of the late 60’s and early ’70’s, and it might be surprising that quite a bit was already known about what was systematically needed and how to do it – and it’s not all that different than what is still discussed now. 40 years and we are still talking about it.”
I guess what really irked me about Kristof’s article was that so much of it rang of things I’ve read before, and the information was presented as if it were some great new discovery. And because the op-ed is in the Times, and Kristof is not ‘unknown,’ it will (and has been getting) quite a bit of attention.
I do think we need to keep studying potential causes, but the emphasis on these over the day to day needs/services/ etc. seems out of balance. At Care2.com, someone commented that the need for special ed services and accommodations was a “trendy” thing, while it’s more “reasonable” to look for causes. I of course didn’t agree with that, but I also feel that that comment sums up some attitudes (not the ones of those reading here). As Patricia Wright noted, the press seems to give undo attention to “causes.”
Snow day was pretty good until near the end (nervous mom syndrome got the better of me and Charlie?)—
@Emma, I was bothered all day by reading about the mother who killed her son. The parts about head-banging really got to me–yes it is beyond hard to deal with–but there is help, there is hope. Sorry if I sound melodramatic or some such; something about reading those 2 NYT articles rather got to me.

Ruminating on your last paragraph, Regina—
“I spend a lot of time reading old articles from research and pilot studies of the late 60’s and early ’70’s, and it might be surprising that quite a bit was already known about what was systematically needed and how to do it – and it’s not all that different than what is still discussed now. 40 years and we are still talking about it.”
I guess what really irked me about Kristof’s article was that so much of it rang of things I’ve read before, and the information was presented as if it were some great new discovery. And because the op-ed is in the Times, and Kristof is not ‘unknown,’ it will (and has been getting) quite a bit of attention.
I do think we need to keep studying potential causes, but the emphasis on these over the day to day needs/services/ etc. seems out of balance. At Care2.com, someone commented that the need for special ed services and accommodations was a “trendy” thing, while it’s more “reasonable” to look for causes. I of course didn’t agree with that, but I also feel that that comment sums up some attitudes (not the ones of those reading here). As Patricia Wright noted, the press seems to give undo attention to “causes.”
Snow day was pretty good until near the end (nervous mom syndrome got the better of me and Charlie?)—
@Emma, I was bothered all day by reading about the mother who killed her son. The parts about head-banging really got to me–yes it is beyond hard to deal with–but there is help, there is hope. Sorry if I sound melodramatic or some such; something about reading those 2 NYT articles rather got to me.

I don’t think you are being melodramatic, I’m very concerned about that particular article.
Although it was mentioned that the mum was possibly obsessive or “consumed” by finding a cure, at the same time it suggests that raising a child with autism (and by implication disability in general) is detrimental to the parents mental health. She was driven to this action by her son’s “suffering”.
It fails to acknowledge that parents are all individuals too, with their own backgrounds, baggage and hangups. Add to that the support and services available to any particular family… How well parents adjust and adapt to raising a child with a developmental disability is not dependent on the diagnosis (autism still is often portrayed as the worst thing possible), or even just the services available, it’s much more complex than that. How we perceive autism and/or disability also plays a role – the list is endless of influences it endless.
I particularly dislike this sentence
”Some people can’t stand a child who cries for an hour,” said Conant. ”Can you imagine living with a child who’s been screaming for eight years?”
yes, because that’s what life is “really like”? Talk about stereotyping.
There was a similar story around christmas time in the Angelman Syndrome community. It was very hard to read.

What Emma said.
Kristina, kind of on your prompt, after dinner I sat down and re-read that Kristof column, just to see if I was judging him too harshly…and,
A. I thought it was badly written, cobbling several things together in trying to make a cogent point.
B. That autism was stuffed in there first as a convenient whipping boy for what I believe will be a personal hobby-horse of “toxins”.
C. I found it disingenous to speak of finding the matter hard to talk about as a journalist because “evidence is technical, fragmentary and conflicting, and there’s a danger of sensationalizing risks”, and then finishing off by flat out telling people to stay away from particular plastics codes.
D. I looked at the review he cited as his evidence, which may be in a peer reviewed journal, but it’s still a review article, not a study, and it refers to indirect evidence, and “proof of concept” evidence, as in “it’s possible, but we suggest study”, not that “it’s probable”, let alone-“it is”, as the Op-Ed strongly suggested.
And now people are officially freaked out and floating all kinds of theories from the TV to epidurals.
This was a lot of “op”, and not a lot of “ed” from what I could see, and I hope it’s not the wind-up to yet another journalist jumping in there to stir the pot and act as a self-appointed spokesperson for autism “causation”.

@Regina.
Ahem. I kind of thought the Kristof column wasn’t that different in many ways from the writings of another journalist who’s gotten himself very connected with the autism-vaccine “link.”
Your run-down is 110% spot-on. (I think.)
I’d first read about Landrigan’s theories in regard to astroturf.http://www.blisstree.com/articles/keep-off-the-astroturf/
@Emma,
I felt the NYT article had a lot of gaps and made so many assumptions. That “crying for 8 years” quote, yes, it really bothered me too, especially alongside photos of Jordan and her son (smiling) and ex-husband—and the article made the implicit argument that “life with autism/raising a child with a disability is such hell that how can anyone not do what she did”?
Amid all the writing about Karen McCarron, the doctor who killed her autistic daughter, Katie McCarron, there were some articles about how the case was a clear example of the “burden” of raising an autistic child. as if that somewhat “exonerated” a parent from killing their child. I felt some of this sort of thinking was, unfortunately, present in the coverage about Jordan.